Hi Xanadu....My mom is pigeon toed too and was traumatized by people making fun of her when she was little as well...She has extremey tiny feet and she can't move any of her toes individually either...I don't know if that's normal for some people, but I can move all of my toes...

Not sure what this all means, but wanted you to know that I can relate sorta.

:hug:
Nicky

Thanks Nicky, There is so much about this disease that we have to carry with us. The lack of understanding and cruel taunts are something I just grew up with - never realising that there may be a reason. My Grade 1 teacher called me a special child and I believe we are all special - for the way we cope and continue and carry on with this invisible 'foe' with us.

Would you believe that Day 3 into using salbutamol inhalors and I feel a little better ? I have more energy and deep refreshing sleep and am waking up like a new person each day. I have no idea if this is a placebo effect or a sign of CMS but I don't care ! :D For years Drs have put me on and off salbutamol and I am only starting to wonder if this actually MEANS something :rolleyes:

Now to the next stage ... finding some Dr that believes in me enough to order a genetic test...

glad that you are feeling better, what ever the reason is...

what you need to find is a Dr. that believe in you enough...

the genetic testing may or may not be fruitful, as even when there is clear evidence for CMS, they are not always able to find the gene responsible for it.

but you doctor, should be ready to be your partner and try to find the best managment options, even if he/she doesn't have "objective" evidence. trust you and what you tell him, more then his books. think about you and not about how to best cover his *****.

hope you find one soon...

alice

I feel really well !! The best I have felt in years and years!! I cannot believe that a simple puffer can do this! But it is - I am sure. I can even feel when it wears off a little. Could many of my symptoms have been CO2 ?

The most amazing change has been my sleep. I SLEEP and wake refreshed. Even my 30yo headache is starting to change. It is so important to have quality sleep but why did my Specialists not help me even when the tests showed the problem ?

I have a great Dr. But she is 'only' a GP and sneered at by the Specialists. She can only do so much. Can she order an expensive genetic test ? I do not know. The system can be so frustrating at times. I have a Dr that cares and knows so much more but may not be able to help me due to political correctness....

But meanwhile ... there has been a miracle !!!! :grouphug:

Would you believe another relative had the wobbley leg syndrome ? My family were talking about great aunt today. She died 30 years ago and versions of the story varied but it seems she got 'wobbley legs' and 'walked funny' when she was about 40 or 50 and was in a nursing home by about 60. I have to check more and try and find out more details... but she was a sister to my maternal grandma.

Xanadu,

I'm so glad you finally got some relief and you're feeling better. Keep working at it and in time you'll get some answers and the proper treatment. I'll be keeping good thoughts. Take care.;)

Hugs,
Pat

Your primary doctor can order breathing tests and an arterial blood gas. That's a start. She can refer you on to a neuro-ophthalmologist who can assess your eyes and their muscles.

Gather evidence. Take photos. Pull it all together to show a clinical picture. Then get someone, anyone, to help you!!

Annie

Have had the breathing tests. They show a problem but no one takes any notice of that. I can go back to that Dr again. My eyes are not really a problem - its only slight there. I don't think my State has a NO. Once again its all about the travel and expense. Hoping to get some genetic tests done re CMS when I see GP next but am not sure if she can order those or not. Or if the tests are done in Australia even. If Neuro can't or won't order the CMS gene tests - who will /can ? There is a genetics dr that my second cousin went to - would that be the person I need to see ? Would he get upset if GP writes a referral telling him to test for CMS ? Won't he wonder why the Neuro has not written the referral ? I get confused by all the paperwork procedures and how to be pc to Drs.